Dear Family and Friends,
Our 2017 Huntington Disease (HD) Team hope walk will be on October 14th at 1030am at Mt. Trashmore Park in Virginia Beach.Please join us by attending or donating.
What is HD doing to Rob? It is definitely progressing at a slow but alarming pace. His speech is more unclear, his physical endurance and balance makes it difficult for him to walk. Loss of memory and outbursts of anger are more common.
We are members of the HD Southeastern Virginia Affiliate, and we are hoping to get more involve. We had the opportunity to travel to Halifax, for the HD Canadian Convention in November and in June to Chicago for the U.S. Convention. Again this year, Rob spoke in front of the first year Medical Students at Duke University, and did a presentation of his physical therapy at Tidewater Community College, here in Virginia Beach.
In June, Rob completed a 4 years drug study at Duke University, after 19 visits, The FDA has approved Austedo (deutetrabenazine) tablets for the treatment of chorea associated with Huntington’s disease. The drug has previously been referred to as SD-809 by its developers, Teva Pharmaceuticals. Once a year we go to UVA, in Charlottesville for Enroll-HD. It is a worldwide observational study for Huntington’s disease families. It will monitor how the disease appears and changes over time in different people.
Our Neurologist, Dr. Karen Thomas is absolutely wonderful, Rob received 16 weeks at home therapies (physical, speech, occupational and educational).He did very well, and it improved is physical endurance. His next appointment is right around the corner, and we will bring up how we can control his anger outbursts. We added grab bars, shower bench, additional handrail to go up the stairs.All in all Rob has a good moral, and his positive outlook on life is amazing.
Thank You, Merci Beaucoup, Brigitte & Rob